Trayten Stone is one of most social kids you will ever meet, and much of San Angelo is already aware of his huge smile, thanks to the Children’s Miracle Network adding him to their 2013 list of miracle kids.
Stone has a very rare genetic disorder called Wolf–Hirschhorn syndrome, so rare that wolfhirschhorn.org estimates there to only be around 15 in Texas.
Stone’s story is inspiring; the family was once told he’d never walk or talk. Now, they have a 12-year-old son who can do both.
Trayten’s mother, Tammy Stone, mentioned that it has been quite the journey the past 12 years, beginning with her first sonogram on her second child.
“They started watching him when they did my first sonogram and saw that he was small,” said Stone. “I was low on amniotic fluid but he was ok, he was just not growing.”
Trayten was born at 35 weeks, and only weighed four pounds and five ounces. He did have trouble breathing and nursing, but was sent home after seven nights in the hospital. At that time he had to be fed with a syringe.
When her little boy had still not grown by three months of age, Early Childhood Intervention picked up the case. At first they outfitted Stone with a machine that helped her baby feed. When that didn’t work, he was outfitted with a gastronomy button to stop calorie loss.
“He kept having acid reflux,” Stone explained. “Not only was he losing calories trying to eat, but he was losing them throwing up.”
Once Trayten was old enough to travel, the Stones went to San Antonio to see a geneticist. Stone said that they even took him to SeaWorld while they were there.
“He was fine all day at SeaWorld and that night he had his first seizure,” explained Stone. “We stayed in the San Antonio hospital for seven days.”
When the diagnosis came back, it was Pitt-Rogers-Danks syndrome, a genetic disorder characterized by reduced fetal growth and mental retardation.
“They stuck with that diagnosis until last year,” said Stone. But after many years, she felt that nothing more was being done.
“I kind of felt like we had reached a stopping point, like nothing more was being done, so I wanted a second opinion,” she mentioned. “Apparently the diagnosis Trayten has can be misdiagnosed as Pitt-Rogers-Danks.”
The results came back with Wolf–Hirschhorn syndrome, a partial deletion of chromosome four, which is incredibly rare, with only one in 50,000 children having the disorder, according to Trayten Stone’s bio on cmnsanangelo.org.
Both disorders are very similar and include missing parts of chromosome four, and both are characterized by stunted growth.
Trayten exhibited stunted growth. He was mobile, but didn’t start walking until he was five, and began talking shortly after.
“Two things I think changed that, Sonrisas therapeutic horseback riding and his little brother was starting to walk,” Stone smiled. “Even though he might be behind his brother developmentally, he wasn’t going to let Bubba outdo him.”
Stone fondly recounted the memory of her 5-year-old at the time letting go of the walker, then progressing to walking with minimal assistance. Eventually he was walking on his own, and began speaking shortly thereafter.
Once Trayten began walking, there was no slowing him down, he became a very active and social kid.
“I would take him to my daughter’s gymnastics competitions and he would walk over to other people,” Stone laughed. “He forced me to be more social, he's my social butterfly.”
His socialness extends to his presence at school, where Stone says that there is no one at TLCA that doesn’t know the smiling boy.
“We go somewhere and we’ll hear ‘That’s Trayten!’” Stone smiled.
The future does hold some problems for the sixth grader, but the Stone family is taking it one day at a time.
They don’t think he’s going to get any bigger,” she explained. “In his case, the worst case is that his seizures will get worse.”
Currently Trayten is on five different seizure medications, but so far the severity of the seizures has seemed to level out.
The Stones continue to participate in the Children’s Miracle Network, and young Trayten will be involved at the Rodeo and the Radiothon coming up Feb. 27.